Question for Short Debate
My Lords, more than 10 years ago, Mencap launched a report entitled Death by Indifference. It was part of a campaign made necessary by the ongoing poor treatment of people with learning difficulties in the health service. The report highlighted the serious consequences of poor healthcare through the tragic stories of six people: Emma, Mark, Martin, Ted, Tom and Warren. Mencap wanted the world to know that their deaths were senseless and could have been avoided.
Just last week, the Learning Disabilities Mortality Review Programme report, commissioned by NHS England, was published. It again highlighted the deeply concerning figures on the life expectancy of people with learning disabilities. It showed that women with a learning disability are dying 29 years before women in the general population, and for men it is 23 years. This is truly shocking and demands urgent action. This and previous research have shown that people with a learning disability are four times more likely to die from causes that were amenable to good-quality healthcare.
A YouGov survey of 500 healthcare professionals last year, commissioned by Mencap, found that almost a quarter had never attended any training specifically on learning disability, that two-thirds wanted more learning disability training, and that more than half thought that more on-the-job learning disability training would enable them to provide better support to people with learning disabilities. Almost two-thirds said a lack of practical resources for themselves and their colleagues might also be contributing to the problem. Most concerning was that more than a quarter thought that negative attitudes towards people with a learning disability might be a contributing factor in avoidable deaths.
On that point of negative attitudes towards people with disabilities, I highlight the case of Ann Grant. She says:
“I have been to hospital lots of times and had good and bad experiences … I had a good experience of going to hospital when having an operation on my knee. The learning disability nurse helped by giving me some easy-to-read information about what would happen. The doctor explained things in a way I could understand and the nurses looked after me. This was a good experience because all the staff communicated well and took the time to help me. But in 2016, I had to go to accident and emergency, and the receptionist did not understand my needs. I kept having to repeat myself which made me feel very anxious. I asked if I could go and wait in a quiet space but there wasn’t anywhere to go. They told me to wait outside if I wanted to have space. The doctors were not very good and gave me information which was different to what the nurses had told me. They changed my medication and did not clearly explain what I needed to do. It was very difficult to understand the words they used, especially the jargon. If they would just take some time to explain things better, I would know what to do”.
That is not an untypical case. Mencap recently launched the Treat me well campaign, which makes six suggestions. I have given the Minister a copy and I hope he will give the Government’s view when he responds.
I move on to the issue of eradicating health inequalities for people with autism. Autism, as we know, is not a mental health condition. It is perfectly possible to have autism and good mental health but more than 70% of autistic children develop mental health problems at some point in their lives. Problems such as anxiety and depression can be key drivers of the stark health inequality that autistic people face.
In its report, Personal Tragedies, Public Crisis, the autism charity, Autistica, highlights research from Sweden that suggests that suicide is a leading cause of premature mortality in autistic people in that country. It calls for action in the UK. These findings deserve close attention to ensure that autistic people are not subject to unacceptable health inequality.
In 2016, NHS England published The Five Year Forward View for Mental Health, which outlines how it plans to improve mental health services in England. It includes a number of proposals for new care pathways to help people access the right support. Importantly, it proposes a care pathway for autism. Work on designing the pathway is due to start in 2018, but we do not yet have any details of what it will include.
The National Autistic Society, of which I and the noble Baroness, Lady Browning, are vice-presidents, believes that the care pathway must cover the age range of children, young people and adults on the autism spectrum. It should include timely access to autism diagnosis and autism training for all mental health staff, and make reasonable adjustments to mental health treatments. It should also identify what works and share best practice. It needs to account for the fact that mental health needs may present differently in autistic people. It should be developed in partnership and co-operation with autistic people, their families and organisations that support people with autism. Can the Minister confirm that the autism care pathway will be developed? Will it cover the age ranges that I have mentioned? Will it cover diagnosis, access to tailored mental health support and autism training—three key points?
More needs to be done to improve GP recording of autism. The National Autistic Society has called on the Government and NHS England to improve the recording of autism in GP records, which was also reflected in the Government’s Think Autism adult strategy. This will have two key benefits. GPs will be better able to make reasonable adjustments for autistic people and be better equipped to support their autistic patients. Secondly, anonymised data from GP records will give a picture of the health—including mental health—needs of autistic people. This will be crucial in addressing health inequalities and help to make sure that the right support is put in place at the right time. Similar initiatives have been used to support people with a learning disability, asthma and diabetes.
NICE has recommended that this be put in place by creating an indicator in the Quality and Outcomes Framework. I hope the Government and NHS England will accept this. The Minister may have something to say about this when he responds.
I have one final point. I am not alone in encountering countless stories of problems getting a diagnosis for anyone with autism. People wait years for a diagnosis. It is a disgrace. Putting a stop to such delays should be a major priority of all of us in Parliament and government: 61% of people who responded to a National Autistic Society survey said that they felt relieved to get a diagnosis and 58% said that it led to them getting new or more support. That is important. It adds to the quality of their life. Will the Minister include autism diagnosis waiting times in the CCG improvement and assurance framework? It would be a very good step forward.
Our fellow citizens living with autism and learning disabilities face challenges to their lives that most of us in this Room never encounter, but they are truly amazing people. All they ask is to be treated as equals and to be given the same chances and opportunities that you and I take for granted and a chance of a full and happy life. Surely they deserve the care of a first-class NHS service. That is not too much to ask, is it?
My Lords, I thank the noble Lord, Lord Touhig, for initiating this debate. I shall speak on the importance of early diagnosis of children who are showing signs of HFA and Asperger’s syndrome. It is still hard to get a diagnosis, partly as there is no fixed set of behaviours common to all, but there are clear signs that healthcare professionals should be trained about when faced with a toddler or older child. There is also the problem of the invisibility of autism in the healthcare system, so it is vital for professionals to trust parental instincts and listen to their concerns to ensure that every individual with autism receives the correct care and support throughout their life.
It can make a difference if the condition is diagnosed early. Though frightening and bewildering, it is essential for parents and children to be able to move forward. With a diagnosis, they can understand why they are like they are. It can prevent distress as the child develops and can stop further physical illness. Many high-functioning children with autism are not diagnosed until they enter school and start struggling socially. By 24 months an autism diagnosis tends to become stable, but from 18 months onwards an intervention programme can be highly effective in improving IQ, language ability and social interaction. Research has shown that children are waiting more than three and a half years for an autism diagnosis. Parents who are involved with early diagnosis and treatment have found they are better equipped to give specific support at varying stages of the child’s development.
I welcome the fact that data collection within the NHS starts in April next year, but no decision has been made on data collection within GPs’ surgeries. A flag against a patient’s file could assist the GP and the person with autism, particularly those who have no outward physical signs. The noble Lord, Lord Touhig, mentioned the anxiety that this can cause. Decision-makers cannot plan services locally unless they know how many people need to use them. Without accurate information, autistic people can be left without the right support being available. Anonymised data from GP records would provide decision-makers with the data they need to plan effectively.
Around 70% of children on the autistic spectrum go to mainstream schools. Before a diagnosis is given, these children are often marked as disruptive. I welcome the Government’s strategy that, from September, every new teacher will have autistic training within their curriculum. What training is available for classroom assistants? Some of the most successful people in the country have an autism diagnosis, but we need to ensure that the collection of social and health data relating to autism becomes more co-ordinated and systematic; that local authorities’ and GPs’ information systems allow the collection of data from toddler-age upwards; and that provision of school nurses and health visitors who can identify those with autism is built into tendering arrangements for health service agreements with schools and colleges. If as a society we can follow through on the above, I hope that those with autism will feel that they have not been forgotten, do not have to struggle for their identity within their community and can reach their potential, and that those who care for them feel that they can get the support they require.
I too thank the noble Lord, Lord Touhig, for tabling today’s debate and pay tribute to him and other noble Lords around this House who champion the cause of people with learning disabilities and learning difficulties and those on the autistic spectrum. As we have heard, that group includes some of the most vulnerable people in our society, for whom our advocacy and that of others is essential in ensuring their basic safety, that their needs are met and that their quality of life is the very best it can be.
I wish to focus my brief remarks on this question of advocacy, and to do so from the perspective not of someone with clinical or personal experience, but as the patron of a Suffolk charity, Ace Anglia, which does wonderful work in this field. In this world of care pathways, detailed measurements and performance indicators, there is a danger of creating care by algorithm, which loses sight of the individual. I heard from a specialist nurse about the difficulties of defining learning difficulty and learning disability. The result of that nuance is that you can end up with your name not on the learning disability register, so you do not get called for a health check, and then the danger of undiagnosed health conditions can increase.
A learning disability adviser to the NHS told me that, as someone with a mild learning disability himself, he was convinced of the need for more people like him in paid NHS roles because, “They know how things should be like”. That is why it is crucial to have high-quality local advocates, such as Ace Anglia, which work with individuals on a one-to-one basis to improve their lives then, crucially, turn that experience into valuable learning, which can then be used to help others. I have been told by a number of people in health and social care in Suffolk that the work of Ace has been a real catalyst for cultural change and has created what they have described as “real-world understanding”.
Ace holds regular get-togethers around the county for its users, which are used to share experiences of services such as the NHS or public transport. It provides good qualitative evidence to local service providers. The organisation has become expert in facilitating that sort of event so that users can feel genuinely empowered in what can be a hostile system. Ace has been commissioned by its local clinical commissioning group to produce 20 easy-read resources to support people with learning disabilities in navigating their way through primary care services. These will give people more knowledge and control over their health and allow for better communications. So much depends on having a local group as effective as Ace and on the personal relationships that they can build with the key people locally in the NHS, or social services. Could the Minister reflect on how these local support networks can be helped to thrive right around the country?
My Lords, I too congratulate the noble Lord on securing this debate, on what he said and on the very powerful points that he made, as well as his final call for equality and whether it is too much to ask. This is a really important set of issues, not just for the people we are talking about but for the NHS as a whole, as it seeks to move towards a much more personalised approach to care—and what could need a personalised approach more than the sort of issues that we are talking about here?
As everyone here has, I have received very good evidence from the different charities involved in this field, which make an enormous number of very powerful points. Of the various questions that they ask, I select three to ask the Minister. The first has already been mentioned by the noble Lord, Lord Touhig. Will the Minister confirm that an autism care pathway will be established in the way the noble Lord talked about? Secondly, will the review of the Mental Health Act that is under way look at how it works in particular for people with autism? Thirdly, I am struck by how many other health issues people with autism and learning disabilities have. I was struck by the evidence that we received—I suspect that we all received it—from SeeAbility that there are GP health checks for people with learning disability and special dental care but nothing at all for access to specialised eye care, with which an awful lot of people in this area have problems.
I conclude by speaking briefly about a personal example about the importance of the personal focus here. I have a close relative, aged 56, who has Down’s syndrome, who lives with his 94 year-old father. I have three observations to make. First, as he ages, there is less and less evidence and research about what will happen to him as he moves on into his 60s and 70s, simply because people have not lived that long so far. There is a real need here for the continuation of the research and making sure that it is of a high quality. The second point is the obvious one that quite a lot of people are living with ageing parents in this way. It is important that there is support for them.
The third point comes from a recent occasion when my relative ended up having an operation on his knee and it is about the health service staff’s understanding of the condition and how to talk to people with these conditions. I was struck that my relative would tend to agree with you if you asked a question and would try to work out what you wanted him to say. If you asked, “Is the pain worse on this side?”, he would reply, “Yes”, but if you then asked, “Or is the pain worse on this side?”, he would say “Yes”. You need to understand how to work through those sorts of issues. I was struck that the GP found this difficult, but the orthopaedic surgeon did it brilliantly. There is a real personal aspect here and it is important to have people in the health service who understand how to do that.
I finish by congratulating the Government, because I understand from a recent press release that they have established a new “golden hello” for nurses coming in at postgraduate level who are working with people with learning disabilities, and for mental health and district nurses. This is a very positive step forward.
My Lords, I declare an interest as the father of an autistic daughter. I agree 100% with the noble Baroness, Lady Scott, that those on the autistic spectrum are among the most vulnerable in our society. The Government’s mandate to NHS England requires them to tackle health inequality for autistic people, and ensuring access to good quality mental health support is one important way in which this can be achieved. I have to stress that, as the noble Lord, Lord Touhig, said, autism is not a mental health condition, but more than 70% of autistic people will develop mental health problems at some stage in their lives. This is why it is one of the key drivers of the stark health inequalities faced by people on the spectrum.
The noble Lord pointed out that, in 2016, NHS England published its mental health five-year forward view, which outlines how it plans to improve mental health services in England. It includes a number of proposals, as the noble Lord said, for care pathways to help people to access the right support and, importantly, it proposes a care pathway for autism. The Government have indicated that work on designing that pathway is due to start this year, but it is now May and we do not yet have any detail on what the pathway will include. Like other noble Lords, I would welcome some clarity today from the Minister on how the pathway is progressing and, in particular, the plans they have for developing the pathway in conjunction with autistic people and their families.
The new care pathway is a welcome building block that will, in time, help to reduce the stark health inequalities that autistic people face, but it is vital that the new pathway covers timely access to autism diagnosis; autism training for all mental health staff; and making reasonable adjustments to mental health treatments so that they work for autistic people. Finally, it should also contain the capacity to research what works and then use that research to share best practice with other agencies.
My Lords, I put my name down for this debate because I am afraid I recognised the issue. The problem that the NHS has with groups who do not handle the basis of diagnosis—that is, the one-to-one interview—is one that is very well established. The idea that you will go to talk to your doctor and he will try to get from you what you think the problems are and to talk through them is a very good model for most people, but not for all. Two groups for which this model breaks down are talked about here. Somebody who is autistic, who may not relate to that person, is always going to have slightly more problems than somebody else. Of course, anybody who knows anything about autism—I do not know anywhere near as much as many people in this debate—knows that no two people with autism will relate in exactly the same way.
You are asking an incredible amount of a doctor or any other health professional to get that diagnosis correct, without giving them guidance and training—including, importantly, guidance and training on when to call in an expert. That is something that we need to hear about. When do you call in the person who really knows? How do you give the health professional the confidence of saying, “You will not be marked down as a professional by calling in someone who knows more”? The same will be true for those who have learning disabilities. It is a different set of skills, but still one that is required. Will you train those health professionals to call in the support of an expert and give them the room and flexibility to do it?
I finish on the need for early diagnosis in all hidden disabilities. Autism is something that is so well known that we only need to say “Me too” on it. Once the person knows it, you cut down on anxiety and stress, which are the fast track to mental illness. Let us make sure that we cut down at least that one shortcut.
My Lords, I, too, have a family interest. My son has a learning disability and is on the autistic spectrum.
The Learning Disabilities Mortality Review report was discussed briefly following an Urgent Question last night, and the Minister made some very reassuring comments about training, on which I hope that he will expand today. The mortality review is an extremely important programme, but it cannot change entrenched discriminatory attitudes on its own. Equally important is what action Ministers, NHS England and NHS trusts take to prevent avoidable deaths, given this important evidence.
Interestingly, the recommendations in the recent report are almost identical to recommendations made in 2007 Mencap’s game-changing Death by Indifference report: make sure that hospital staff understand about people with learning difficulties. Make sure that hospital staff work together with other agencies, including families, and that they understand the law on capacity and consent. They are the same recommendations every time, but we do not seem to be able to do anything about it.
It is critical that tackling health inequalities faced by people with a learning disability and/or autism is a priority among Ministers. NHS England must continue the funding of the mortality review programme beyond its current one-year extension and continue the good work of its learning disability programme beyond next March. Other confidential inquiries are permanent. Why is this group being treated differently?
In addition, individual NHS trusts must take urgent action in line with the recommendations of the review, not least in improving learning disability awareness training and practice in relation to the Mental Capacity Act. Doctors and nurses probably need a lower threshold for admission and to understand that sending a person with a learning disability home and suggesting that they come back if they are worried is inadequate. That may be one reason for the episodes of sepsis which underlie 11% of the deaths reported by the learning disability review.
The third sector is campaigning effectively, but it needs the Government and the NHS to commit, too. Mencap launched the Treat Me Well campaign in February, an aim of which is to ensure that no health professional sets foot on a hospital ward without learning disability awareness training. Dimensions, another national learning disability provider, is launching an initiative to offer training within primary care, and we have heard about SeeAbility’s report.
In my time at St George’s at the University of London, the most effective training for medical students was co-delivered by people with learning disabilities. Sadly, it ended on my retirement, because it depends on having a learning disability expert on the staff. If it was mandated, it will be different.
We know that involving people helps health professionals to understand what it is like to have difficulties communicating or understanding complex information. I look forward to working with the noble Lord, Lord Touhig, who has raised this important subject today, and other noble Lords, including the Minister, on this agenda.
My Lords, I refer to my interests in the register, including family interests. I apologise to the noble Lord as I was a minute late. He was on his feet; he beat me to it. I apologise to the Committee.
This subject covers far more than we have time for today. This will be a quick canter. I shall refer first to the physical disabilities of people on the autistic spectrum. The Mencap report, Death by Indifference, which I feel I have been quoting in debate after debate for so many years in this House, fills me with despair. We are still talking about people on the autistic spectrum either in primary care or in hospital wards being disadvantaged, sometimes to the point of death. That in some cases is no exaggeration, purely because their autism was not understood by health professionals. In some cases, mothers have stood by hospital beds trying to explain to professionals how their adult child functions and how they are affected, yet they are still being ignored because the child is over 18—and why listen to somebody with a lifetime’s experience of that individual? People have made the point that they are individuals and they all function differently, albeit having the same diagnosis.
On mental health, this is not rocket science. The vast majority of people who grow up into adolescence and then into young adulthood, particularly, suffer mental illness on top of the autism, mainly because very simple, straightforward support services are denied them. That downward spiral of despair, when they are unable to access often very basic services, is hardly surprising. Most of us would suffer from mental health problems, if we were on the autistic spectrum, and if by the time we were 25 we had tried very hard to be part of society and the education system and to have relationships with other people but still could not get through that glass wall. Very often, it is through social services and others that these supports are forthcoming but, if they are not forthcoming, there is a serious mental health downward spiral. There is a paucity of support out there among clinicians. Very few psychiatrists, particularly in the provinces, have a working knowledge of autistic people. It can be fine in the big cities, but not so much out in the sticks. If they do not understand the condition, sometimes even the professionals do more harm than good.
I shall give a plug to the National Autistic Society. My noble friend Lord Touhig has worked very hard with the society, and there is an autism hospital passport on its website. It can be downloaded, and I know that people have used it, so that when they are admitted to hospital, the professionals have the information that they need about that individual. It is not the answer to everything, but I recommend those sorts of tools to make sure that people are given the support that is out there. There are now some apps that people can have on their phones, if they are on the autistic spectrum, which is very good.
I hope that the Autism Act, which I must finally mention, will be put into practice. If it were, things such as speedy or timely diagnosis, and some of the problems that have been mentioned today would not still be being raised by Members of the House.
My Lords, I too congratulate the noble Lord, Lord Touhig, on tabling this debate, and it is a great pleasure to follow the noble Baroness, Lady Browning—a bit humbling, actually, because she knows far more about this than me.
I pay tribute in my short contribution to June Felton—not a name noble Lords will know—who pioneered an intensive educational approach to very young children with severe autism. They were non-verbal and very badly affected, but nevertheless had underlying abilities, as many severely autistic children do. June Felton successfully prepared those severely autistic children to go to their normal schools—quite an achievement if one saw the children at the start, as I did, and then a few years later. Anyone involved in the design of education for that group of children—the very autistic, but able—would do well to try to find the carefully kept records of June Felton’s small but extraordinary Family Tree school. Sadly she died rather young, and the school closed.
I fully support the Autistic Society’s call for an autism and education strategy. An appropriate educational environment for a child can really make the difference between ultimately leading a reasonably normal life on the one hand—even for some severely affected children—and lifelong institutional care on the other. For children with autism and a limited IQ, of course the goals will be different, but in every case education is the absolute key to maximising ability and reducing dependence as far as conceivably possible. For the NHS and social care, that is critical.
The impact on families of a severely autistic child cannot be overstated. Family life is likely to be disrupted every minute of every day, in my experience. The strain on the parents’ own relationship and the child’s siblings is immeasurable. The normal reward of parenthood—the display of love from one’s children—has a horrible tendency to be a little limited from these children; so it is a tough, tough world that these parents live in. Of course, the cost of a comprehensive autistic education programme to meet the needs of children across the whole autistic spectrum would be considerable. However, I urge the noble Lord, who I know understands these things, to make sure that a good cost-benefit analysis is incorporated into the strategy development. For instance, £200,000 spent on an intensive education for a child may save the NHS and social care millions over that child’s lifetime. It is never going to be a waste of money.
As others have done, I want to touch on the mental health of autistic people. If we put ourselves in the position of an autistic person—probably feeling rather cut off, perhaps having no friends, very likely unemployed or in a job in which they really do not belong or feel completely disconnected from—it is not at all surprising that 70% finish up with depression or anxiety, as a number of other noble Lords have mentioned. I think that I certainly would, were I in that position. Others have mentioned the NHS England mental health five- year forward view and the care pathway for autism that they are recommending. I ask the Minister, when is that work going to begin? Others have asked a range of questions, but I do not think that it has begun. It is absolutely crucial. I hope that the Minister can give some assurance to these children, families and adults—not only for themselves, though that is crucial, but for the sustainability of the NHS and our social care. This is a large group of people, and the potential savings from a really good strategy are immeasurable.
My Lords, we are very fortunate to have such a powerful advocate for the way in which to deal with this. On my own front, I have a young grandson who is on the autistic spectrum. We are also getting many more people with autism coming into the Motability scheme, so I am interested on two fronts. In advance of today’s gathering I spoke to the chair of the British Psychological Society’s Division of Educational and Child Psychology, Dr Vivian Hill. She also looks after our little boy. We have talked about the child, but it is the stress on the family that is immense. I see despair and sadness in my daughter—she says to me sometimes, “What is going to happen to him if I am not alive? Who’s going to look after him?” She brought up one issue on the health side, in particular. There is a lady—I will not give her name—who is now 35; she has a university degree, and works with Vivian at University College London interviewing people for the educational course. She has been in and out of hospital this year with various problems, to say the least. She said yesterday that she calculated that, for the first six months of the year, it has probably cost the health service £50,000—but they stopped the welfare attention that she used to have once a fortnight, which could have made a huge difference in understanding what the situation is. She was saying that there should be a way—in the same way that there is in collecting tax, for example—that a name flashes up immediately, in any ward anywhere throughout the country, if somebody is on the spectrum.
I also spoke yesterday to two fascinating headmasters in the Horsham area about money and so on. Many noble Lords have talked about how early it is possible to identify children on the spectrum. Everybody here feels that if you can get a child into a mainstream school, they have a chance of making it in life—a chance of acquiring self-esteem and of getting somewhere. We have not talked about money but really we are talking about money being made available to achieve that. If one looks at this from a taxpayer’s point of view, it is reckoned that if things were handled differently on the health service side, we would save a huge amount of money, although there is no point in my trying to guess the figures. Our little boy was diagnosed at the age of three. He was very fortunate and is getting through it very strongly. From the perspective of the taxpayer, the savings from early diagnosis—as a long-term investment—are immense.
In conclusion, as has been said, most of us in this Room are very fortunate. We must help these people, many of whom have brilliant minds and want to play their part in society. There has been enough talk.
My Lords, I too thank the noble Lord, Lord Touhig, for introducing this debate. I declare my interest as listed in the register.
People who have never been involved with learning disabilities are unclear about what they really mean. People with a learning disability will have the emotions of an adult—they can fall in love, worry, get cross and be jealous—but it is the reduced intellectual ability that affects them for their whole life. They are subject to mental health problems and early-onset dementia.
Learning disability is subject to the Equality Act and the United Nations Convention on the Rights of Persons with Disabilities. Somebody with a learning disability should be able to expect good NHS treatment. They should also expect clinicians caring for them to make reasonable adjustments. In the questions after yesterday’s Statement, I raised the issues of funding, clinician training and the provision of suitable written material, and I will not revisit them now. However, I should like to raise the issue mentioned by the noble Lord, Lord Crisp—access to NHS sight tests.
People with a learning disability are at high risk of sight problems. Adults are 10 times more likely to be visually impaired and six in 10 will need glasses. Most people think that sight tests are easy to access, but for many people with more complex needs they are not. No targeted scheme is run by the NHS or NHS England, unlike GP health checks or special dental care. For years, the same tariff of around £20 has been paid by NHS England to deliver these sight tests. This covers about half the cost of a standard high-street test, let alone the service that someone with more complex needs requires.
The outcome is that many people with learning disabilities are instead sent to use the sight-testing services at hospital eye clinics. Without any national scheme, parents are at a loss as to where to go. Half of the children in special schools have a vision problem. Around 45% of children of the age of 11 in a special school will not have had a sight test. This makes for a poorer quality of life than would otherwise be the case. Therefore, will the Minister look at whether an NHS England scheme in the community and in special schools, which four in five children with more severe learning disabilities attend, is a possibility?
As I mentioned, people with learning disabilities have rights, and this lack of appropriate treatment is an unacceptable face of discrimination. Therefore, will the Minister please investigate this and get back to us? I might also suggest that perhaps a much longer debate than this one is required on this well-ignored group.
My Lords, I congratulate my noble friend on introducing this important debate, made particularly poignant by the learning disabilities mortality review, which we discussed yesterday. I also congratulate all noble Lords on sticking to the time limit, on being succinct and on being informative and moving in their remarks. I also thank the National Autistic Society, Mencap and SeeAbility for their briefings.
I was going to talk about eye care because I was so taken by the brief that we got on that. SeeAbility points to a gap and I hope that the Minister will be able to assist with that. The National Autistic Society quite rightly wanted to know when the autism pathway will be progressed. That has been mentioned by many noble Lords and I echo that. It is important also that the department looks at whether the Transforming Care programme meets the needs of autistic people and takes action to ensure that it does. Given that the Government are reviewing the Mental Health Act, will the Minister commit to look explicitly at how the Act works for autistic people?
I shall finish with something also to do with eyes. Desmond’s story, which came from the National Autistic Society or Mencap, is worth reading into the record:
“My learning disability means I grasp things more slowly and I need people to communicate clearly. Normally I go to my local hospital for my eye care—they are good with me. But in 20113 they referred me to another hospital to get an operation. That is where the problems began. I had a new doctor looking at my eye before the operation and he didn’t explain anything to me about what would happen. In the past, the hospital staff sedated me for operations on my eyes. I thought this would happen again. But instead, the doctor immediately started operating on me, while I was still awake. I was scared, and they were telling me not to close my eyes. It was a horrible feeling. I didn’t have a chance to explain what would make me feel more comfortable. There was no-one to talk it through and no time for the doctors to get to know me. I wish the doctors could have told me what was happening and why—it’s what anyone should expect. I hope staff get better training in the future to make sure they communicate better with people with a learning disability”.
My Lords, I congratulate the noble Lord, Lord Touhig, on calling for this debate and on his good grace in agreeing to meet ahead of it so that we were able to discuss some of the issues that have been raised today. I hope to answer as many questions as I possibly can. I also congratulate all noble Lords on their contributions, some of which were very personal. Whether it is a family experience or the experience of people we know, have met or have communicated with, it brings gravitas to a debate. I congratulate Mencap and the National Autistic Society on the quality of their briefings and, if nothing else, on making sure that government is kept honest in its attempts to address the needs of this group.
Noble Lords have set out the many challenges that people with learning disabilities and autism face in leading healthy and productive lives. We have talked about inequalities in health and well-being compared to those without learning disabilities or autism; comorbidities, and particularly mental health needs; great difficulties in accessing health and social care support, as the noble Lord, Lord Touhig, and the noble Baroness, Lady Thornton, and others brought to life through their experiences and the stories they told; difficulties in fulfilling educational potential; and difficulties in securing employment.
The sad fact is that people with a learning disability are more likely to experience major illnesses, to develop them younger and to die sooner. Those are the bald facts. Autistic people are also at increased risk of dying younger and have a higher risk of developing mental health problems and conditions such as epilepsy, diabetes and heart disease. They are less likely to get the screening, checks and treatment they need. They continue to face barriers to accessing services and information. My noble friend Lord Sterling talked about the impact on families: it affects not just the individual concerned but everyone around them. Such inequalities are deep rooted and we have not only a moral obligation to tackle them but, as the noble Baroness, Lady Meacher, pointed out, an economic rationale as well. I agree with the noble Baroness, Lady Jolly, that we need to start from the position of rights: the right of these individuals to enjoy the same standard of health and care as everyone else.
I will set out a few of the things that the Government are doing to try to improve outcomes for this group and then will address questions posed by noble Lords. My noble friend Lord Astor of Hever mentioned the NHS mandate, which is an important place to start. It sets out our ambition and expectation to reduce the health gap between people with mental health problems—who are not the direct focus of today’s debate—learning disabilities and autism and the population as a whole, and support them to live full, healthy and independent lives. The learning disability annual health check is a big part of meeting this aim, in looking for undiagnosed health conditions early and promoting the uptake of preventive care. As the noble Lord, Lord Addington, pointed out, as a group, they are not necessarily that good at coming forward to seek support or to express their needs. NHS England has increased the funding available for GPs for these health checks and there is an ambition to significantly raise the number of people benefiting from them.
We did unfortunately have cause yesterday to discuss the first annual report from the learning disabilities mortality review. I say unfortunately, because, as many noble Lords have pointed out, it sets out the scale of the challenge that still exists to reduce early deaths and health inequalities for this group. The fact of the programme is in itself progress, but the number of deaths reported, and indeed those which have been reviewed and are of concern, is still very high. This demonstrates how much more work there is to do. I did commit in the House yesterday to NHS England and the department working together to try to take forward all the recommendations in that report, as far as we can. It has been noted by the noble Baroness, Lady Hollins, that this is not the first time these recommendations have been made.
Some of the action taking place includes publishing data for the first time on avoidable deaths, including those of people with learning disabilities. Trusts will be inspected against their learning and the changes they have made from studying these avoidable deaths. In answer to the question from the noble Baroness, Lady Hollins, NHS England has provided additional funding for this year. I should say at this point that it has not ruled out funding for future years. The point here is that we need to get up to speed on the backlog of reviews that are taking place and make sure that that is fully embedded in the NHS.
NHS England and the RightCare programme are also producing guidance on pathways of care tailored to the needs of people with learning disabilities, including for diabetes. There are further pathways coming soon on epilepsy, sepsis and respiratory conditions.
The noble Lord, Lord Addington, and the noble Baronesses, Lady Hollins and Lady Meacher, all mentioned training. That is a critical point. There is a training and education framework for people with learning disabilities for use by health and care staff, and there is one to follow for autism training. That builds on the tiered approach that has proved successful in training all staff for dementia and is being rolled out at the moment.
I would like to address the particular issue raised by the noble Lords, Lord Touhig and Lord Crisp, the noble Baronesses, Lady Thornton and Lady Meacher, and my noble friends Lord Astor and Lady Browning—by pretty much everybody: the autism pathways that were mentioned in the five-year forward view for mental health. These pathways are being developed for both adults and children. Specifically, they are for those with a mental health diagnosis with neural developmental comorbidities such as autism. They are about the two things happening together, rather than simply for people with autism alone. That makes sense, because this is about access to mental health services. We have been pressing NHS England for a timeline in the run-up to this debate. I regret that I do not yet have that, but I will continue to press for it and will share news on our progress with noble Lords as soon as I get it.
Some of the other ways in which we are acting to try to reduce that health gap include the wonderfully named STOMP programme—stopping overmedication of people with a learning disability, autism, or both with psychotropic medicines. A pledge to stop overmedication has been signed by 24 professional royal colleges and societies, which have all developed clear plans to deliver on this, and by over 150 social care providers supporting 50,000 people with learning disabilities, autism or both. That is good progress. It is fair to say also that the Improving Access to Psychological Therapies programme has adapted its standard intervention for people with learning disabilities and autism. NHS England is working to update its framework for community mental health services for this particular group.
Many noble Lords have talked about the issues around delayed diagnosis. It was touched on by the noble Lord, Lord Touhig, and my noble friend Lady Chisholm. There is an ongoing review of the quality and outcomes framework by NHS England, which is looking at implementing the NICE recommendation about putting a flag effectively on the record. I do not have a publication date for that but I reassure noble Lords that I will write to them once I do. We also have for the first time autism indicators in the Mental Health Services Data Set, collected from 1 April this year, which is bringing more transparency to the process and helping us improve performance locally.
My noble friend Lady Browning mentioned the Autism Act, which remains the only condition-specific legislation in England. I hope that the consequent adult autism strategy represents to her a clear commitment by the Government to change the way that we support and provide services for adults on the autism spectrum to address those inequalities. I reassure her about the seriousness with which the Government undertake those actions.
While we are talking about schooling, it is worth touching on special educational needs, although it is not necessarily a topic for today. My noble friend Lord Sterling talked about getting the right support at an early age. The introduction of education, health and care plans as a consequence of the Children and Families Act 2014 was a major step forward. Ofsted and the Care Quality Commission are inspecting the arrangements that CCGs and local authorities have for those to make sure that we can improve performance and drive out variation. I am aware that there is huge variation across the country in both the availability and quality of such plans.
While we are talking about education, several noble Lords—the noble Baroness, Lady Scott of Needham Market, the noble Lords, Lord Crisp and Lord Addington, and my noble friend Lady Browning—talked about the issue of advocacy. I absolutely applaud the work that Ace Anglia is doing and the production of easy-read materials. The noble Baroness asked what government can do to support that process. Training, which we have touched on, is one thing, but there is also clearly a role for government funding—I know that the Government have supported the Autism Education Trust to support the development of training for school staff. I think that will provide some reassurance to my noble friend Lady Chisholm, who also asked about the training of school staff.
The noble Baroness, Lady Meacher, also talked about education. I do not know about the work of June Felton but it sounds interesting. My first ever role in education was as a governor of a special school in Wandsworth called Garratt Park School, which has an autism base, and I eventually became chair of governors there. The quality of a good intervention and what it can do for children’s lives is truly dramatic. Indeed, another school in that area is the former Rainbow School, which supports very autistic children with behavioural approaches and which has changed their lives. That school lodged with us for some time at one of the free schools I set up, so I had the opportunity to see that in action, and it does amazing stuff. The links between health and education are absolutely there, which is what the EHC plans are meant to be bringing together.
I will finish with a few more points that I have not touched on yet. On delayed diagnosis, which was raised by the noble Lord, Lord Touhig, from April NHS Digital has been collecting autism diagnosis waiting time data, so that that is now visible, and the autism strategy task and finish group is exploring how to use that data as part of a local accountability regime. So that is in progress, and I hope that we will see something positive emerge from that.
The noble Lord, Lord Crisp, and the noble Baroness, Lady Thornton, mentioned the Mental Health Act, which is an important issue. Professor Simon Wessely is chairing his independent review and has published an interim report—if noble Lords have not seen it, I encourage them to look at it; I will send them a copy of the report. It sets out some of the specific issues that need to be explored under that review for people with learning disabilities and autism, so I can reassure them that that is an explicit part of the work of that review.
The noble Lord, Lord Crisp, and the noble Baronesses, Lady Jolly and Lady Thornton, also mentioned eye care. If you think about the process of having your eyes tested and think about what that must be like for someone with sensory issues, with autism or learning disabilities, it is not a pleasant thought. An NHS working group is looking at this, and I am reassured to see that SeeAbility is part of that. They are looking at that, but if they feel that that is not going as it should, I would be grateful if they could write to me. The noble Lord, Lord Crisp, also mentioned the key issue of staffing, which is critical. We are trying to get more nurses into the NHS; having this golden hello for shortage areas, including learning disabilities, is a good step forward. There is a desire—my noble friend Lady Browning raised this—to increase the number of mental health staff so that we can start to meet some of the standards which we have set ourselves.
I hope that I have managed to answer all questions noble Lords have posed. Again I thank the noble Lord, Lord Touhig, for instigating this debate. The noble Baroness, Lady Jolly, said yesterday that we should judge ourselves as a society on how we look after some of the most vulnerable people. This debate has brought the needs, challenges but also the opportunities and rights of this group to the fore. I reassure noble Lords that it is a major part of the Government’s policy and attention. We know that there is more work to be done; there are some good signs of progress, but there is clearly a lot more work to do together to make sure that people with learning disabilities and autism have the opportunity to lead a healthy, productive and independent life.
Committee adjourned at 6 pm.